I have been following this site for several months and am very impressed with the knowledge of its members as well as the strength and courage exhibited by those whose PC has advanced. I’m an active 76 year old who was able to walk 2,395 miles and play 204 rounds of golf in 2018 and am fortunate to have a significantly younger lady in my life.
A brief history- gleason 7, PSA 3.2 in 2007.
Proton beam 2008. PSA .1 until 12/2016 .-
PSA 2.7. 1/2017- Bone scan and MRI of prostate negative.
PSA 10.2 - 9/2017 - Ga-68 PSMA PET/CT at UCSF showed hot spot in left seminal vesicle.
11/17 Transperineal biopsy (30 samples) of prostate and both seminal vesicles. All samples negative.
3/18 - PSA 11.7 Feraheme MRI of lymph nodes- negative.
6/18 - PSA 19.6 Axumen PET/CT scan - negative.
9/18 - PSA 24.5 1st appointment with M O at OHSU - continue watchful waiting.
12/18 -PSA 34.8 - Axumin PET/CT scan negative.
1/15/19 - 2nd appointment with M O
My dilemma: I am experiencing a sharply rising PSA meaning that the cancer has likely returned. But we are unable to find it and have no specific target. Is it time for some form of ADT? Quality of life is very important to me. But I don’t want to take undue risk. Looking for recommendations. Also, any courses of action besides watchful waiting or ADT? THANKS!
Written by
Coastguy
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You found it in the seminal vesicles. They are squiggly (a technical term! lol) and extremely difficult to biopsy. Salvage HDR brachytherapy (which should be available at UCSF) may be able to get the rest of it. Alternatively, salvage whole gland SBRT is available in a clinical trial at NIH or by Don Feller in San Diego. Here are the options:
Before you start on adjuvant ADT, you might wish to ask for a circulating tumor cell analysis from CellSearch. If they find 5 or more, your cancer may be systemic and micrometastatic - in which case, salvage therapy is probably of no benefit.
Thanks Tall - the biopsy was done in Sarasota by an urologist and a R O who specializes in brachytherapy. They took 6 samples in the left seminal vesicle. Hopkins reviewed the biopsy results. The R O then suggested the Feraheme MRI which was negative. What do you think of trying daily 50 mg bicalutamide to see if it reduces my PSA?
Sounds like Dr Dattoli? He used IMRT on my pelvic lymph nodes and ADT3 plus metformin which have been clear since (2015). If PCa is in SVs it was in prostate . Were SVs hit with proton? If not then why not now?
my best had rising psa for many years they couldn't find it until it was discovered he had a enlarged prostrate. radiate the prostrate and the seminal vesicles and then see what happens or remove the prostrate as will
My own personal experience is that PSMA PET scans seem to be more accurate. I had an Axumin scan in July 2018 and a PSMA in Oct 2018. Only the PSMA scan found lymph node and bone issues. The Axumin had completely missed them.
Could you have another PSMA scan? Seems you are well located for getting one and you already have a baseline from your previous one if I read your history correctly.
My husband’s brachytherapy guy Dr. Gordon Grado of Scottsdale AZ would not do brachy until he had biopsy confirmation as well. I thought it was a state law or maybe required for insurance coverage.
It took two biopsies in a row done st the University of Minnesota by a urologist who was supposedly well skilled. A certain technique that was suggested by Dr. Grado accomplished getting a positive core. That suggestion came in a sealed envelope and the surgeon’s nurse was somewhat insulted by it all.
Thank you for the reply. From the beginning my urologist in Eugene Or. was trying to avoid hormones if possible. Before the negative results of the biopsy, my R O wanted me to start Casodex for a month, then 6 weeks of IMRT followed by brachytherapy to the seminal vesicle. While waiting for the results of the biopsy, I went to Florida Hospital in Orlando to get a second opinion from a R O to do SBRT. Once receiving the biopsy results, he suggested doing the Axumin Scan. What treatment is your husband doing now?
Yes he was on Lupron which didn’t work well so Casodex was added up to 150 mg. That combo brought PSA down some but there was disagreement among docs on using 150 mg due to risks. That’s when he had Provenge.
We relocated right after Provenge and new doc stopped Casodex abruptly and started xtandi. Husband assumed castrate resistant. He avoided hormones for 15 years of 18 yr diagnosis. He was already impotent from daVinci LRP (liars) but did not want SEs of hormones.
Provenge was entirely covered by Medicare no problem. It works “magically” and one has to have faith that it’s working behind the scene as there is no measurement. You have to find a doctor who’s a believer, too.
C11 acetate scan by Phoenix Molecular is still considered by many the gold standard for detection of previously undetectable metastasis. I personally know a number of men who swear by this clinic.
My local friends suggest that Acetate is superior to Choline. Much depends on expertise of analysis by Radiologist and that Dr. Almeida of Phoenix Molecular is among if not the best in the country. I have no personal experience with either. Likely comparative info can be found on the web. I do believe that choline may have Medicare coverage.
Thanks for sharing your information Coastguy. Who is the MO you are seeing at OHSU? And do you recommend them or any other specific people at OHSU?
I have an appointment with Hilary Shreves on 4/15. PSA jumped to 0.7 after 2 tests of <0.01 following RP last August at OHSU. Just starting to find out who I should be talking to.
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